Tans CIDP Journey

In 2018 my world was thrown into kaos with a major relapse from the autoimmune disease CIDP " chronic inflammatory dymilateing polyneuropathy "  was diagnosed with in 2016.   An accurate diagnosis for either C.I.D.P or Guillian - Barrè Syndrome comes from the spinal fluid . Not a we think you have... A good Neurologist will also have nerve conducting studies carried out . One of the biggest emotional hurdles once leaving hosptial and some whilst still in with C.I.D.P or GBS patients face is " You don't look sick " take away the tubes, the ventilators, the drips , as your body on the inside is going crazy. Yet you don't look sick. Some of us are left with a physical disability using aides but we can still look normal. Don't let this get to you. Your journey is not easy and it's for a C.I.D.P its for life. So keep doing your hair every day , ladies keep doing as you do your make up and please shine. C.I.D.P and GBS attacks us from the inside. Don't let it from the outside. Its Cruel. It's Raw, It's Rare and very Real.  My body recently after going so well on the ivig , plasma exchange and oral chemo has decided to start to relapse again. The pain in my leg's and numbness is causing difficulty for me walking again.  Apart of me wants to just give up , but my motto is Never gIve up so l won't.   For now its back to about a week on the steriod drip , continue plasma exchange, oral chemo and then the only other step forward is a" Stem Cell therapy  " A bone marrow transplant " the stem cell therapy is early stages of discussion so waiting for specialst to make that call.  For now any help we can recieve is greatly appreciated.  

Donations

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  • Dougall Pennefather  
    • $500 
    • 10 d
  • Sonia D'Ochoa 
    • $50 
    • 21 d
  • SONIA ASTUTI 
    • $500 
    • 21 d
  • Chad Thibodeaux 
    • $50 
    • 22 d
  • Claudio Corradini 
    • $50 
    • 22 d
See all

Organizer

Tania Drummond 
Organizer
Melbourne, AU
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